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Irish mom fights for her child’s access to cannabis (and wins)

8 year old Ava Barry has a rare, drug-resistant form of epilepsy called Dravet Syndrome, which can result in up to 20 seizures a day. Ava’s seizures can last anything from two minutes to a couple of hours and vary in intensity. Also known as Severe Myoclonic Epilepsy of Infancy, Dravet affects just one in 60,000 children in its most catastrophic form.

Ava’s doctors in Ireland told her parents that she would never walk or talk, that she would always be confined to a wheelchair, and that she would require residential care for the rest of her life. They were treating Ava with pharmaceutical drugs including Frisium, Epilim, Keppra, Zonegran, and Serpentil. When they put Vera on Serpentil she ended up in a coma for a week, and when she came out of the coma she had lost so much body mass she could not walk or hold her head up. It took an entire year to bring her back to a point where she could walk on her own after almost losing her completely. The drug the doctors gave Ava to treat her symptoms almost killed her.

When Ava’s mother Vera disagreed with the doctor’s after they told her her daughter would never talk or walk they laughed at her and called her a parent in denial.

Shortly after that, Ava’s doctors told her parents that they had exhausted every medication, there was nothing left to do, and that Vera should be taken home and made comfortable to die.

But Ava’s parents knew more than her doctors did. They were aware of another option they had not yet tried. They had heard about an American CBD strain of cannabis called Charlotte’s Web, that it was improving the lives, even saving lives, of children suffering from seizure illnesses like Dravet Syndrome. They may have had heard that, in specific cases, cannabis oil is being permitted in parts of the US, Australia, Brazil and even Columbia, for medical applications.

They tried to bring cannabis oil from Europe into Ireland but it was seized at the border. Ava’s family was eventually forced to leave Ireland entirely to legally obtain medicine to save Vera’s precious life, and when they did access cannabis oil the results were remarkable.

Seizure free for as long as 3 weeks at a time, walking, playing, defying everything her doctors said was inevitable — Ava is thriving, and her family has been able to return home to Ireland. At some point Ava’s mother, Vera, went on a media campaign, walking across Ireland in a quest to spread awareness and pressure the Irish government. And it worked. And, just days ago, in a remarkable development, the news media reported that the State intends to reimburse the family for the cost of Ava’s medicinal cannabis. Ava’s amazing mom Vera joined me directly from the country of Ireland on my Hempresent show on Cannabisradio.com

In recent weeks I have interviewed parents of children with Dravet Syndrome, and other forms of epilepsy and autism spectrum disorder fighting the same fight for their kids in Australia, South Africa, the United Kingdom, and New Zealand. I hear that we need more scientific research. These parents don’t need any research. They have witnessed the effect of cannabis oil on their children’s conditions. Several of them had never seen their children talk until they had been on cannabis oil for a few weeks. One mother in Australia had to administer CPR to her daughter after she went into cardiac arrest from the cocktail of anti-convulsant pharmaceuticals her doctors had her on. If the scientific community wants research let’s get it done today. Children all over the world are suffering and do not have time to wait. You can hear all of these parents on my show on Cannabisradio.com.

Note: This is a seattlepi.com reader blog. It is not written or edited by the P-I. The authors are solely responsible for content. E-mail us at newmedia@seattlepi.com if you consider a post inappropriate.